I have the opportunity to go to a family gathering for people who have my rare disease FOP in Orlando in mid November. Because I am unable to sit in an airplane seat we would have to drive. I recently learned it is 1709 miles from Grand Rapids to Orlando. I have not met anyone with FOP in over 30 years and it would be great to make new friends and also see the top FOP researcher Fred Kaplan, whom I met way back in 1991 when my parents and I went to the very first symposium in Philadelphia. Also my doctor in the Mayo Clinic drug study I’m involved in will be there. My brother Scott will go with me along with an aide. Hopefully we will have time to see some of the sights. My parents and I went to Florida during the mid 80's and I would guess there are a lot of changes. We would stay in Orlando for three or four days and with travel time it would be a ten to twelve day trip in all. Anything you can offer toward this trip of a lifetime would be much appreciated! For more information about the gathering go to: https://www.ifopa.org/2019_family_gathering  If you want to learn more about my disease FOP go to my support group's web site at: http://ifopa.org Thank You for your support! Five years ago I did an interview on local television and the video link is: https://www.youtube.com/watch?v=Y2kbb39blb4